Hospice: I had no idea

Like many Boomers, I am experiencing the deaths of close friends and beloved family members at a fast and furious Joyrate. Sometimes the deaths come after a long and painful dying process. Other times – Poof! People are gone with no warning. This week, three friends whom I loved dearly died unexpectedly. I felt like someone punched me in the stomach.
In an attempt to deal with my grief, I went searching for information on the Internet and came upon an organization called The American Hospice Foundation (AHF). For over 20 years, AHF worked to improve access to quality hospice care through public education, professional training, and consumer advocacy. And just like the deaths of loved ones, I was saddened to learn that AHF has also “died.” They closed their doors June 2014. What a loss!

I learned a lot about hospice from the AHF website, and if AHF were to shut down the website, their invaluable content would be lost in cyberspace forever. Here’s a brief summary of two new things that I learned about hospice from the AHF website:

#1. Families have a choice in hospice programs.
Hospice is likely to be the most important health care decision we make. For a long time, we could assume that every hospice provided high-quality care. That assumption is no longer safe. Families must shop around. To start the process, request a home visit for patient assessment and a customized Q & A. How receptive a hospice is to the following questions is an indicator of the quality of their program:

What do others say about your organization? Get references.

How long has the hospice been in operation?

Is the hospice Medicare-certified?

What is the expectation regarding the family’s role in caregiving?

Is there anything currently being done for the patient that you would not do?

(Make a list of specific family needs.) How will you address these needs?

What extra services are offered?

Is your availability 24/7?

How rapid is crisis response?

Do patients ever get transferred to inpatient care? Under what circumstances? And where do they go?

Is family respite care available? What kind? Under what circumstances?

Are your MDs/RNs certified in palliative care?

How are family complaints handled?

What kind of emotional support do you provide – now and after?

#2. Despite palliative medicine, many individuals continue to suffer at the end of life.
Patients, suffering or not, have the right to refuse life-sustaining medical treatment (such as dialysis or a ventilator) through instruction, advance directives, or through a substitute decision-maker. But what about people, including a large and growing population with advanced dementia who are not dependent upon life-sustaining medical treatment? How do they exercise this option when there is no life-sustaining medical treatment to refuse?

To accelerate the dying process, people sometimes choose to voluntarily stop oral eating and drinking (VSED) as an exit option. Nevertheless, VSED may be resisted by healthcare practitioners either because they think that it is illegal or because they are uncertain of its legality. To date, there has been little legal analysis of a right to VSED.

If individuals wish to refuse nutrition and hydration just as they may refuse other intrusions on their personal autonomy, it must be discussed ahead of time and can be exercised through an advance directive or a surrogate decision maker.
None of us wants to be at the mercy of a stranger (healthcare practitioner) who holds opposing views to what we or our loved ones would want at the end of life. Do your homework now.